Patient Registries, The What and Why

Patient registries have been developing and growing in number in the last several years. The National Institute of Health (NIH) has a non-exhaustive list of patient registries that includes the Autoimmune Registry, GenomeConnect, and the Sample Collection Registry. Many nonprofit patient organizations have a patient registry branch to accelerate research and medicine. But, what is a patient registry? 

According to Dr. Richard Glicklich, “a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).” The term “patient” in patient registries is used to describe the medical nature of the information collected. 

Oftentimes, both patients and their caregivers or family members can participate in clinical registries to provide researchers with valuable data regarding a specific condition. In order to participate, interested individuals can create a patient profile on the respective website and fill in information regarding their condition, diagnosis, treatment history, everyday life and challenges, and demographic information. For most registries, by signing up, patients can consent to learn about available research participation opportunities. It should be noted that clinical trial participation is usually not a requirement for participating in a patient registry and patients can choose when they would like to participate in a study. Registries are in themselves observational research studies. 

Why Are Patient Registries Important?

According to the NIH, patient registries can

  • inform and improve clinical care practices 
  • examine factors that influence quality of life
  • be a tool for understanding disease
  • provide data to develop safer and more effective therapeutics 
  • support research initiatives
  • recruit research participants for clinical studies and trials. 

Patient registries allow researchers and physicians to better understand the course of disease so that patient care and therapeutics can be improved. They provide invaluable data that sheds light on patterns and hypotheses in clinical research. Moreover, clinical registries can be an effective tool for spreading awareness about research participation opportunities and recruiting individuals for clinical trials. 

Registries offer hope for improved patient care, disease management, and are paving the road to precision medicine. By participating in a registry, you are empowered to make a difference for those living with your condition and for those of generations to come


By: Neelem Sheikh

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